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My Taper Journey (Austin)

Updated: Mar 5, 2023

My Clonazepam Taper This is a long post about my clonazepam taper. It’s my experience. Yours may differ. None of it is intended as advice. Please consult your doctor before changing medication doses. I’m three years into sleep myoclonus. For more than two of those years, the benzodiazepine Clonazepam allowed me to sleep, with some support from other medications, supplements, and behavior. Without medication, I’d repeatedly awake with a strong jerk in some muscle or muscle group. Despite its effectiveness, I tapered off Clonazepam over four months this past summer and fall. In this post I explain why and how. WHY I TAPERED OFF Benzodiazepines are intended for short-term use, and it’s not difficult to find concerning stories about challenges getting off them after long-term use. With my dose low, about 0.3mg per night, and no signs of loss of effectiveness, my neurologist had no concerns. But I worried about what the medication might be doing to my brain (specifically my GABA receptors), and what problems might await me in the future. That’s why I proposed to my neurologist tapering off, at a time of my choosing. Together we made a plan to do so. REPLACEMENT THERAPY Clonazepam was controlling my symptoms, so we needed to replace it with something. I had some experience with the anticonvulsant Levetiracetam (brand name Keppra, which I will use because it is easier to say and remember). At quite low doses (e.g., 125mg), it knocked me out, though also caused fatigue the next day. For controlling sleep myoclonus, I had confidence it could replace Clonazepam and simply hoped my body would adjust so daytime fatigue would diminish. If I could pull off a switch from Clonazepam to Keppra, that would be a significant victory. Not only would it demonstrate that I could come off a benzodiazepine, it would provide me with a second way to control my condition. This would be reassuring for my future. If one way stopped working, I’d have the other to fall back on. SLOW AND STEADY The Ashton Manual explains how benzodiazepines work, why they can cause problems, and how to taper off them. In short: slowly. I based my Clonazepam reduction schedule on one from the manual, following it from July through October, increasing my dose of Keppra as I did so. (There are updates to the original manual). The Ashton Manual’s recommended approach has three components. First, no backtracking: only hold steady or reduce the dose, never increase it. Second, only reduce the dose when you’ve achieved stability (symptom control, no withdrawal issues) at the current dose. The general guidance is to only reduce your dose every one to two weeks, but take longer as needed. Third, reduce your dose in very small increments, basically as small as you can make them.

This requires pill cutting. With ordinary cutters, Clonazepam pills crumble making dose control difficult. But the Equadose pill cutter can handle them without crushing. (I used the original version of this cutter, not v2.) Unless you have some hand dexterity issues, using it to cut a 0.5mg Clonazepam pill into 8ths (0.0625mg pieces) is not difficult. Do it in the obvious way, like cutting pieces of a cake. It’s even possible to cut them into 16ths (0.03125mg pieces) with one trick. The last cut is not like cutting a cake slice in the normal way, but like splitting the layers of a cake slice — or think of cutting open an English muffin (but just a wedge of it).

SUCCESS AND GOING FORWARD With this approach, I reduced my Clonazepam dose to zero over four months, while increasing Keppra from zero to approximately 800mg. In rough figures, this implies a tradeoff of 2500mg of Keppra per 1mg of Clonazepam, but undoubtedly there is variation across individuals. I experienced no significant issues in following this approach. My body adjusted to higher Keppra doses without daytime fatigue, as I hoped. I did notice a few sleep issues after some steps in my tapper, but nothing outside the normal variation I’ve come to expect with this condition. Encouragingly, I have noticed an improvement in effectiveness in Zolpidem and Zaleplon, which I use occasionally. This suggests to me some rehabilitation of my GABA receptors, as they are GABA agonists, like Clonazepam. My neurologist recommends I remain off Clonazepam for “a few months,” at which point I can use it again for short periods if I get into a difficult patch with my condition. With luck, I won’t need it for long-term use again. But if I do, my experience gives me the confidence I can taper off.

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